Findings released this week show that statutory funding for children’s hospices and palliative care charities in England is well below the level needed. With 40,000 children in England with life limiting or life threatening conditions, Government spending needs to reflect this, but in fact funding is being reduced. Children’s palliative care charities’ costs are increasing and are almost 10% more than last year. However, year on year, the state has reduced its spending and last year saw a 22% decrease. Shockingly, if you were to look at state funding for palliative care in terms of how far it would go over a year, it would run out on 21st March next year.

As a charity supporting over 400 families of seriously-ill children, we can see first-hand the impact this lack of funding has.

Our findings show that many of the families we support feel that when it comes to accessing services such as respite care, they are facing a brick wall with local authorities who just don’t have the funding to provide it to families in need.

Many families struggle due to the financial strain that caring for a seriously-ill child can put them under. Due to budget cuts they are unable to access practical help, advice and guidance regarding the grants and benefits available. At Sebastian’s Action Trust we aim to bridge that gap with our dedicated outreach provision and financial support and welfare service.

External agencies, including the local community nursing team state, that without the Trust’s outreach programme many families would struggle to cope and there would be a significant strain on existing services which are already stretched.

We do not receive a single penny of government funding. Covering Berkshire, Surrey, Hampshire, Oxfordshire and Buckinghamshire,. Sebastian’s Action Trust is here to walk alongside families of seriously-ill children. We will continue to do so , but we call for Government spending in this area to be increased, so throughout the country, the needs of every child, and their families, can be met. #fundnotfail

The full report, issued by Together for Short Lives, can be viewed here: